ICU baby's Founders' Stories
My brother was born at 25 gestational weeks in 1981 and survived without complications - a true miracle baby. Despite my family history, I was blessed to deliver two babies without incident. By the time I became pregnant with my third child, the NICU was not a place that I expected to be.
In my second trimester, I was diagnosed with polyhydramnios - a condition when a pregnant mother has too much amniotic fluid. Fifty percent of the time the causes of polyhydramnios are known -- gestational diabetes, fetal abnormalities, Down Syndrome, etc. The other fifty percent of babies born to a Mother with polyhyhydramnios are born without any longterm complications.
Just like that, the excitement that comes with pregnancy was changed for me. I was humbled and afraid. Doctors ruled out some of what could be the causes, but could not rule out others until the baby's delivery.
Fast forward to delivery day... Benedict was born at 9.2 lbs. - chubby and perfect. We thought we were in the clear until the second day of Benedict's life when he became sick and was taken quickly from me. The next time I saw him, he was in the NICU with IVs and chords all over him. Benedict's time in the NICU was the longest seconds of our lives, but in hindsight a very short time. We were the "best case scenario."
My passion to give back generates from witnessing other families' and babies' struggles in the NICU while I sat at Benedict's bedside. For months I feared for my son, yet I left the hospital with a healthy baby. Many other families have much more challenging NICU stays and longterm outcomes. We got lucky.
There is a sense of responsibility that comes with receiving the blessing of a healthy child. I now appreciate that not every child's entry into this world is an easy one. It is for these reasons that I advocate for and support families whose stay in the NICU is a week or many months and families whose babies do not leave the hospital. They are not alone because they have a community like ours to uplift them...
There’s no greater love than the love a mother has for her children. I never understood that expression until I held my first baby in my arms, her tiny fingers wrapped around mine. There’s also no greater fear for a mother than that of harm coming to her children. So when I stopped feeling my second baby kick, at just over 25 weeks, a little alarm went off in my head. As I drove to the hospital, I told myself I was overreacting. I never dreamed of the nightmare that was about to begin.
The next 3 days were a blur. Our son Matthew was delivered by emergency C-section and whisked away before we could see him. Tubes were covering his tiny body and machines were keeping him alive. I kept thinking this couldn’t possibly be happening to my sweet baby. Nevertheless I had hope because I had been through this before with my twin nephews. They were born even earlier, at 24 weeks, and they had survived. Yet despite our prayers, in just 48 hours, I held my little angel for the first and last time.
Matthew is and will forever be in my heart. We had twins a year later but he will always be my first son. When my close friend Beth asked me to found ICU baby with her, it was the answer I didn’t even realize I was looking for. This organization is an opportunity for me to support other families who find themselves in the NICU. Families, like my sister, who will spend long terrifying months in the hospital, yet take their babies home. And families, like mine, who won’t be as fortunate.
For all families, in those first hours and days, everything happens so fast and it feels like you’re in a fog. There’s no time to learn how to be your own best advocate. I waited hours to visit Matthew in the NICU because of a lack of wheelchairs. I still regret not speaking up. I also wish someone would have told me to take more pictures of him in case he didn’t make it and to hold him as long as I wanted when he passed... things that sound natural now but when it’s happening and you’re numb, you’re not thinking. Being in the NICU is a journey none of us expect to take, but one that we, at ICU baby, will help families navigate.